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LIFE WITH TD

A place for those affected by tardive dyskinesia (TD) to learn, share, and find inspiration together.

One in four people taking mental health medications may be affected by the uncontrollable movements of TD.1

Read about the real-life experiences of tardive dyskinesia patients and carepartners, from recognizing uncontrollable movements, to the daily impact of TD, and the moment they decided to talk to their doctors about managing the movements.2-4

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This patient has received compensation. Patient image is being used with permission.

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Raven's tardive dyskinesia personal story shared here Raven's tardive dyskinesia personal story shared here

Raven

- Diagnosed with TD

“People would ask me if I was on drugs because my body was always moving. I didn’t realize what was happening and I’m like, well, I can’t stop it from moving.”

 
Raven's tardive dyskinesia story. Raven's tardive dyskinesia story.

Raven

- Diagnosed with TD

“The TD was so bad, I couldn’t eat with a knife or fork. I couldn’t feed myself.”

This is a picture of a person holding their ankle This is a picture of a person holding their ankle

Tasha

- Diagnosed with td

“It started out just a twitch here and there, and then it just gradually got worse and worse, until the point where it was uncontrollable.“

 
Person laying back reading a book with their arm shading there eyes Person laying back reading a book with their arm shading there eyes

Tasha

- Diagnosed with TD

“…when you get this, you can’t control the movements anymore, which is very hard socially to be out in public. It’s very embarrassing. And the more nervous and stressed you are, it makes it a million times worse.”

 

I have the head jerking, the tongue going in and out, my trunk is always shaking, so it affects the whole body.

Peggy

- Diagnosed with TD

Raven’s Blog

Before TD, I led a very active life... However, as my TD symptoms progressed, that all stopped.


Person knitting Person knitting

Peggy

- Diagnosed with TD

“I did normal activities. I drove, I danced, I did hobbies, and I did a lot of things on my own. But the tardive dyskinesia had taken a lot of that away. And it’s made me feel like a monster, and less of a person.”

 
Raven who has tardive dyskinesia is sitting on a bench petting his dog Raven who has tardive dyskinesia is sitting on a bench petting his dog

Raven

- Diagnosed with TD

“I didn’t realize what was happening and I’m like, well, I can’t stop it from moving.”

I was very independent. I could do my housework and laundry and everything; drive, and I went places. It feels like I been put in a prison and locked into a room. It feels like all freedom that I had has been taken away.

Peggy

- Diagnosed with TD

Person sitting on a rock looking at the sunset over the water as far as the eye can see Person sitting on a rock looking at the sunset over the water as far as the eye can see

Peggy

- Diagnosed with TD

“I would be a lot happier, and I would be more confident in myself. And possibly feel like I am whole again and I could do things independently again.”

 
Raven's tardive dyskinesia story while sitting on a bench petting a dog to the right side of the bench. Raven's tardive dyskinesia story while sitting on a bench petting a dog to the right side of the bench.

Raven

- Diagnosed with TD

“I don’t feel like a victim. And I do feel more in control of my life.”

I can feel better about myself because I don’t feel as responsible for not being able to control my body.

Raven

- On Being Diagnosed With TD

Raven’s Blog

“Learning that what I had been experiencing all those years had a name reassured me.”

“Learning that
what I had been
experiencing all
those years had a name
reassured me.”


Close up picture of a person with eye shut tightly due to uncontrollable movements Person laying back reading a book with their arm shading there eyes

Tasha

- Diagnosed with TD

“But then after time as it got worse, then, I wouldn’t notice the facial movements. And I said I could actually feel ‘em because your face and muscles tense up in your neck and your face area. And that’s when I reached out to my girlfriend who was a neurologist and said ‘something’s going on – I don’t know what, but, you know, something is happening.”

 

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References: 1. Tardive dyskinesia. National Alliance on Mental Illness website. https://www.nami.org/Learn-More/Treatment/Mental-Health-Medications/Tardive-Dyskinesia. Accessed May 7, 2020. 2. Warikoo N, Schwartz T, Citrome L. Tardive dyskinesia. In: Schwartz TL, Megna J, Topel ME, eds. Antipsychotic Drugs: Pharmacology, Side Effects and Abuse Prevention. Nova Science Publishers, Inc; 2013:235-258. 3. Waln O, Jankovic J. An update on tardive dyskinesia: from phenomenology to treatment. Tremor Other Hyperkinet Mov. 2013;3:1-11. doi:10.7916/D88P5Z71 4. Sharing the impact of tardive dyskinesia. National Alliance on Mental Illness website. https://notalone.nami.org/post/97568253959/sharing-the-impact-of-tardive-dyskinesia. Accessed May 7, 2020.

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